lupus/antifosfolipid syndrom - buzzing/vibrating body?
 

Hello,

is it possible to have these sensations because of lupus or antifosfolipid syndrom? Does anyone have it?

Antiphospholipid Antibody Syndrome -- aka Hughes Syndrome
 

Hi Barbie,

In the past, I have had a 3 year experience with Antiphospholipid Antibody Syndrome. I never had Lupus. These antibodies were present and problematic for approx. 3 years, once we had tested for them. These antibodies have disappeared and have been gone for approx. 8 years now.

During that time, I was on warfarin. Pre-warfarin, I had severe migraines, daily, for 6 consecutive months.

Both Lupus and Antiphospholipid Antibody Syndrome can have some very strange symptoms.

At the time these antibodies were present within my blood, I had already had PN and a few autoimmune conditions. I cannot be sure of what was causing which symptoms, as I had so many conditions co-occurring all at once.

I wish I could be more helpful to you.

Antiphospholipid antibodies were discovered by a Dr. Hughes, in the U.K., when he was studying Lupus. Thus, in the U.K., the same condition is named "Hughes Syndrome." Dr. Hughes had also discovered, for the first time, the fact that these antibodies can occur outside of Lupus.

The U.K. Foundation is name after Dr. Hughes.

www.hughes-syndrome.org

I had been diagnosed before the U.S. had a foundation for this condition.
Since, a U.S. foundation has been founded.

APS Foundation of America
www.apsfa.org

I do wish I could be more helpful. You are dealing with 2 very tough conditions. Gentle hugs of encouragement to you. :hug:

To our Healing! :grouphug:
DejaVu

Have you had autoimmune testing? Do you have a positive ANA?

Antiphospholipid syndrome (APS) is an autoimmune blood clotting disorder that can cause strokes and miscarriages...among other symptoms related to blood clots. It does not typically cause nerve related symptoms unless the nerve damage came from a stroke (and your symptoms are not common from a stroke). Therefore, I would think your buzzing/vibrations are not from APS.

Lupus affects internal organs and not so much nerves either. But that being said, both of these conditions (Lupus and APS) are autoimmune conditions and therefore can also be commonly associated with immune-mediated neuropathy (which DOES cause your buzzing/vibrations).

Just so you know, the simple presence of anticardiolipins (aCL) or Lupus anticoagulant alone does NOT give you the diagnosis of APS. The criteria for a diagnosis is to have 2 positive labs (at least 6 months apart) AND confirmation of a thrombotic event (like a stroke, DVT, PE, etc) or more then one miscarriage.

It sounds more like your symptoms are the result of a sensory neuropathy...likely immune based.

Thanks for your answers!
So I have to do the test again.
I really dont know what is causing this feelings. And 10 days ago Ive noticed tingling around my ankle on right foot, now I have it also in my left foot. It comes and goes. And a feeling of earthquake in my foot sometimes.

Lupus and APS Can Have Many Strange Symptoms
 

Hi Barbie,

Either or both of these conditions often have some strange symptoms and a wide range of medical manifestations.

Many people with each condition report a myriad of central and peripheral neurological symptoms.

Not only did I have APS. I was a moderator of a large international internet forum for Lupus and related conditions, including APS, for many years. I was also a charter member, along with several specialists (Medical Doctors), of a committee which founded an APS organization.

Usually, hematologists and/or rheumatologists specialize in diagnosing APS.
More often than not, a Rheumatologist tests for the antibodies and combines with finding with symptoms and with other findings, in order to diagnose APS.

If your medical professional has diagnosed APS, please listen to him/her. Educate yourself through contact with people truly highly educated and highly experienced with APS and/or Lupus.

The truth is: There is much controversy amongst the specialists doing the diagnosing and treating of APS. There is NOT clear consensus, in everyday practice, as to which medical events are necessary to diagnose and to treat APS. Many of the doctors actually dealing with these conditions do not follow, nor agree with, the most conservative "case definitions" of lupus and of APS.

You will find more insightful responses-- and facts-- about the various manifestations of APS where there are people living with APS, like the sites I have mentioned above, where there is much information and there are also forums to ask questions and to interact with other people living with APS.

Many of the accompanying signs/symptoms are often neurological in nature.

If you search antiphospholipid syndrome and neuropathy, you will find many sources of information. For instance, a very quick search bring up these two. There are many more.

http://www.ncbi.nlm.nih.gov/pubmed/20156929

http://pmj.bmj.com/content/79/928/81.full

I hope you have some helpful interactions with some people dealing with these conditions, people highly educated as to the many signs/symptoms and complications, as well as the true nuances of these conditions.

To Our Healing,
DejaVu

If you have only had one positive test for APS, then yes, you should be rechecked in 6 months. A good physician that is knowledgeable about APS will also check other clotting factors (like Protein C, Protein S, Glycoprotien and Factor V). It's not a simple one test diagnosis. Much of the general population can have a positive aCL (anticardiolipin), yet NOT have APS. Kind of like having a high ANA alone doesn't mean you have Lupus or Sjogren's or any other autoimmune disease. It's a comprehensive process and includes thrombotic events/symptoms.

Have you had a thrombotic event of any sort?

APS Specialist Needed to Determine Exceptions to the Published Guidelines
 

A Warm Hello! :)

Please Understand --

While we can look up Antiphospholipid Antibody Syndrome case definitions and general guidelines, we cannot provide adequate patient assessment, nor adequate information, nor adequate patient counseling on this forum. There are exceptions to the publicized generalized medical information. Specialists know these exceptions and readily recognize when they come into play.

While a 6 month repeat test is the "general" guideline, there are circumstances under which it's critical to repeat this testing earlier.

A Physician specializing in APS will know the extenuating circumstances under which to repeat testing much sooner. Again, there are circumstances under which earlier repeat testing is deemed critical.

Barbie, as per our PM exchanges, please contact your physician, an APS Foundation and/or an APS specialist as soon as possible. :hug:

Warmly,
DejaVu

Hi En Bloc,

You are sharing lots of good info. :)

I just want to mention the fact that not all Hematologists/Rheumatolgists (or other specialists in APS) adhere strictly to these "generalized" guidelines of when to retest, when to officially diagnose APS, when to treat for APS, etc.

Some do not require a "thrombotic" event prior to treating the patient, depending upon the patient's full picture of symptoms/signs/labs/history, etc.

There are many nuances, many extenuating circumstances, as well as varying opinions on the part of APS Specialists. :)

With APS (and other abnormal clotting disorders), it's critical the patient be fully assessed by an experienced specialist.

I hope this helps! :)

Warmly,
DejaVu

I have had APS since 2002. I have had 3 strokes, 2 amaurosis fugax, and hundreds of TIA's. I have seen numerous specialists about my condition, to include my current treating physicians at Johns Hopkins. I used Warfarin for a couple years, but had to switch to injection LMWH (low molecular weight heparin) back in 2004 and have used it daily since. There was also question of my having CAPS (catastrophic APS) at one point with TIA's occurring hourly...for which I was in ICU receiving every other day plasmapharesis.

Yes, you are correct that some doctors vary on criteria, but not that much (in my experience). Some are more conservative then others in diagnosis and treatment approach, but I have never had one say that a thrombotic event is not required in order to treat (with exception of miscarriage). The only other exception is use of baby aspirin. Actually, the doctors that I have discussed this with express concern to treat with anticoagulants (which carry significant risk) without some documented thrombotic event. And as a patient, I would personally be concerned to take such a drug without confirmation.

I noticed that the APS foundation link you provided doesn't even have any mention of diagnostics or criteria (not that I could find). I have tested negative a couple times over the years, but it is actually common for this to happen. However, no one would ever consider taking me off anticoagulation even if I tested negative for a couple years. I can't even remember the last time it was checked as no one questions the diagnosis.

But at the beginning of symptoms (which can be caused by many things) it is important to define the proper Dx before implementing a course of blood thinners, that have significant risk of not just bleeds, but death in some instances. Criteria are set forth to have some guidelines for doctors to follow. The standard for APS is two positive labs at least 6 months apart (although some might vary on this time period) AND a thrombotic event. I can't imagine people being Rx'd blood thinners with just family history of stroke and therefore I would not expect to see patient Rx'd the same for just a lab showing antibodies (which many people can have positive). Like I said, people are not Dx with Lupus or Sjogren's with just a positive ANA...same goes for a positive aCL. Of course symptoms play a role, and if TIA's are a part of those symptoms, then that would be considered.

I'm not actually a stickler for criteria in all cases, for all diseases, as people are all different with presentation of any disease. But there must be a standard to go by and I think the standard for APS is reasonable...with exceptions of course for some signs of thrombosis, even if the events cannot be documented.

I don't always explain details of my conditions when I speak on this site. But in this case, thought best to let you know that I do have some experience with this condition and have seen numerous specialists at the best facilities in the US (Dallas, Mayo and Johns Hopkins) and one of my doctors actually knew and had spoken to Prof. Hughes (who this condition was named for) at an international conference.

DejaVu and others... thanks for this information. I've been a member of this site for a few years now and have told my story in bits and pieces throughout that time. This thread is of particular interest to me and quite opportune. This past April, I tested mildly positive for anticardiolopin antibodies but five times normal for the beta 2 glycoprotein antibodies (antibodies associated with antiphospholipid syndrome). The test was repeated last week, three months after the initial test per the guidelines, and I'm still significantly positive for the beta 2. It leaves me with meeting the laboratory diagnostic criteria but not the clinical criteria, which requires a thrombotic event. Hmm.. waiting for a stroke or pulmonary embolism. I've had body-wide burning neuropathy for four years, which the doctors tell me is a central nervous system "sensitization" likely caused by the severe viral infection I had. So far, there hasn't been a decision to treat with anticoagulant therapy given the lack of a clinical event. My rheumatologist said the antibodies can be as a result of a chronic viral infection and not a genuine case of aPL. I'm an enigma. Thanks again!

I'm a bit confused as you said you tested 5 times normal/negative...yet I guess now you are positive. Do I have that right? So just the one test positive (and mild + cardiolipin)??

Your rheumy is right that there are other reasons for positive labs. But no one like to wait for a stroke. This would be the case in which aspirin is considered if the next labs (both aCL and Beta 2) are positive. It's a tough call to start adding a risky blood thinner like warfarin when there is no clinical symptom at all.

As for your body wide neuropathy, I would think the virus may have triggered an autoimmune process and thus neuropathy. Have you been checked for various AI diseases??

Thanks for all your answers. I am so angry because I went to take this test by myself (I paid) just to rule out the possiblity of antiphospholipid syndrome, because stroke and cardio-vascular disease runs in our family.Unforunately my test was positive, low to moderate. I have to check once again. But now I am pregnant. I am very very scared of getting Heparin and bleeding to death. I did not have TIAs or stroke, I had migraines with aura (or are that just small tias, dont know). I have also a patent foramen ovale (a hole between two chambers of the heart). Are there any test that can predict if you will have bleeding after taking Heparin?

Am,if I will have negative results, is it possible that I had higher anticardiolipin because of some viral infections (I work in Kindergarden).

Good morning, En Bloc... thanks for your response. What I meant was the reference range for the beta 2 was 0-20 and mine was 115, so a significantly positive test the first time. The second time it had dropped to 75. And you're right... the thought is that the virus set something in motion. I am still testing positive for the parvo virus b19 dna almost five years later. It has entrenched itself in my blood cells. It's been documented to cause arthritis and possibly lupus, but so far extensive AI diseases are all negative except the aPL. I can't help but feel something's brewing because one can't feel this crappy for this long and in this much pain without something eventually showing up. thanks again!

Barbie... I guess anything is possible, but without a confirmed history of a viral infection it would be anyone's guess. As much as I'd like to take a pill to make this all go away, I realize after four years that that's simplistic. There are inherent risks to taking a blood thinner that my doctor and I are going to discuss in September. So sorry that you're struggling with all this.

Oh I got it now!! I thought it meant you had 5 tests...all being normal/negative. Then the positive test. Makes perfects since now!! LOL

I'd agree...something is brewing. Are they checking you out for autoimmune disorders?

I would suggest you see a hematologist if you are pregnant and have the (even just one) positive APS test. APS can be problematic during pregnancy and you should be followed carefully and maybe rechecked (the anticardiolipins) sooner than the 6 months.

There is not really a test to check for possible bleeding after heparin use. The INR level can be monitored with warfarin use, but this test is not effective for heparin. Again, you should follow-up with a hematologist now that you are pregnant.

Thanks, I will. I will mention it to my OB tomorrow. It can cause stroke or misscarriage or stillbirth, I know. But I am very scared of Heparin.